Hep C

[elevenism]

My wife has had hep c for awhile. As far as she can tell she either got it from her one tattoo, or from getting her nails done, but she's had it for quite some time. (and she really, honestly didn't get it from shooting dope. i am the fifty percent of the couple that used to shoot dope.)

In 06 or so, she participated in a drug study with ribavarin and interferon. Things were looking good at first. Her viral load was gone.
BUT, the RNA of the virus was still present. And after a few months, her viral load had climbed right back up.

I've always known that we might not have a whole hell of a lot of time together.

Well, imagine our elation when we heard the words "hepatitis c" and "cure" in the same sentence! Not one, but FIVE new treatments have been approved, and they boast over a 90% CURE rate! There's only one little problem. The companies sell these drugs at a 80 to 90 THOUSAND percent markup.

Now, Sheap is exhibiting a LOT of symptoms that herald the virus doing it's dirty work...28 out of a list of thirty.

Keep in mind, however, that she's still really fucked off from that bout with meningitis, so MAYBE we are wrong. A lot of the symptoms coincide.

But we are trying to be as prepared as possible. There may be an insurance company who will cover a significant portion of the treatment.
I've also heard of pharmaceutical companies helping people with the cost. Maybe medical tourism is another option. Perhaps these drugs are cheaper in countries that value human life and don't attempt to profit from people's desperation in life and death situations (meaning EVERY FUCKING CIVILIZED COUNTRY IN THE WORLD OTHER THAN THIS CORRUPT CORPORATE PLUTOCRACY.)
And then there's always the Heinz Dilemma (http://en.wikipedia.org/wiki/Heinz_dilemma). I swear to god, if she gets full-on dying sick, the only dilemmas i would have is figuring out exactly where to find the drug, and making sure she got it before i was arrested.

It's also possible that the cost of the treatment will go down soon.

SO...i made this thread for two reasons. The most important thing is that i was wondering if any of you had any experience and knowledge of these new hep c treatments. I know i may not get many responses because people tend to automatically assume that if you have hep c, you are a needle junkie. We have experienced this first person. Drs and nurses get kind of uppity and judgemental when Sheap gives her medical history, even though she is a goody two shoes and a nurse herself.

But i wonder. Have any of you or your loved ones found a way to afford one of these new drugs? does anyone know which insurance is best for this situation at this time? is it cheaper in another country or has the american pharmaceutical industry managed to actually rape the world on this one and force people to choose between their homes or the lives of their children, or between sending the kids to college or keeping their wife alive?

Also, i am interested in people's opinions about the ethics here.
Is it right to allow people to die because they can't afford to pay $70 to $90,000 for a treatment that costs less than $100 to produce?
What are your loved one's lives worth? Do we have a fundamental right to live?
Should our government place limits on what a company can charge for a life saving drug?


I personally believe that this is a WONDERFUL example of what is wrong with america.
ALL AMERICA CARES ABOUT IS MONEY!

I believe that the basic (life and death) health of its citizens is as important in gubernatorial duties as national defences.

[allegro]

elevenism you can get Hep C via sex too.

Hospitals are full of scared uneducated people. My late brother got AIDS he assumed via a drug needle but nurses would stand on the other side of the room, like they could get it from the air. People still ask my Mom if my brother was gay.

Anyway, there is a 13-yr-old boy who's the grandson of one of my Mom's friends and he has severe Crohn's. The poor kid has had it since he was really little, and has suffered greatly but has an amazing attitude. The docs had him on some experimental drug for a while that weakened this kid's bones and put him in traction in the hospital for over 6 months. Lovely. He is already in-and-out of the hospital so much from surgeries, he didn't need that.

Enter a new doc and Humira, which is a "biologic" used to treat - among other things - Crohn's. It's been like a miracle drug for this kid. He can finally attend a school 2 days per week, play a little outside, eat some foods by mouth in addition to via his feeding tube, and they hope to have him off his feeding tube soon. But Humira costs $6,000 per month. The docs have done everything they can to enroll him in programs for assistance since this family is completely tapped out and now they just throw medical bills into a pile (and they have insurance). In the case of biologics, the drugs cost a lot because it is so difficult to produce them. But, mostly, the drug companies blame potential lawsuits on the costs of all drugs in the U.S. because we are a particularly litigious society.

Anyway, there are programs that help if you can't afford the drugs. The docs usually point you in that direction. Also, if the drug is still in a somewhat "experimental" phase, the drug company will often give you the drug for free or at a discount if you agree to participate in their study. This happened with G's dad when he had multiple myeloma and was given a drug that cost about $2,000 per month but G's dad got it for free if he agreed to be a part of the study.

[elevenism]

Although you CAN get hep c from sex, it's pretty rare. http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm

THAT'S why they think junkie. What is the prevalence of HCV infection among injection drug users (IDUs)?The most recent surveys of active IDUs indicate that approximately one third of young (aged 18–30 years) IDUs are HCV-infected. Older and former IDUs typically have a much higher prevalence (approximately 70%–90%) of HCV infection, reflecting the increased risk of continued injection drug use. (from the cdc)


It's pretty hard to get it from sex. To get it that way, you have to have sex with an infected person in such a way that your blood comes into contact with their blood. So we are talking menstrual blood meeting bleeding genital sores, rough anal, or, according to the cdc, using "toys that break the skin."
I can't imagine what sort of sex toy would break both of our skin, but it doesn't sound like much fun.

But yeah, we are scared allegro.
We are trying to stay positive but it is fairly obvious to us that she is getting sick.

But we are on top of it!
I REFUSE to lose her. i saw what it would be like when she had the meningitis I can'.
I don't think i'd live very long without her, :/

[allegro]

I had a close friend who died from liver failure related to Hep C, a guy, he died in his 50s about 5 years ago, he also drank A LOT during various depressed phases of his life, he never did IV drugs, had zero tats, had no IVs at all, he did do coke a lot for a few years in the 80s, but the guy was a walking 'ho for a while, slept around a LOT on his g/f (wife) and his wife (a nurse) blames that for his Hep C, she's still pretty bitter about the whole thing. I didn't even KNOW about it until he got really sick and he only told me he had liver problems and I assumed it was from drinking; it wasn't until he died that his wife told me about the Hep C and she's still so pissed I avoid talking with her now, sigh.

But, my friend falls into this demographic (http://www.cdc.gov/features/HepatitisCTesting/). (So do I, gack. (http://www.cbsnews.com/news/cdc-urges-hepatitis-c-test-for-all-baby-boomers-born-between-1945-and-1965/)) Which means that I need to get tested because I don't know if I had any blood transfusions during that time.

AIDS is primarily spread through blood but you can get it via sex, too. Women get it that way a LOT. It's harder for a guy to get it from a girl that way, but we're not talking about YOU, are we? :-) If your wife has a tat, it's entirely possible she got it that way, yes. Also, if she was hospitalized and received an IV during the period before they started screening. It's entirely possible that my brother got AIDS that way, since he received a whole bunch of blood transfusions in the early-80s before they started screening for AIDS and it can live dormant in your system for a long time.

When my brother's HIV became ARC (AIDS-Related Complex, a term since pretty much discontinued and replaced by full-blown AIDS), he was put on about 15 drugs per day and it was REALLY EXPENSIVE but a charitable organization in Detroit helped out by donating the drugs to him each month. In essence, the drugs came from people who had passed away and their families gave the unused drugs back to the organization. This was until my brother was finally approved by Medicaid to receive prescription drug care.

Anyway, there are plenty of drugs that can hold Hep C at bay and these new drugs sound very promising. But, obviously, it takes a preventative team approach with a qualified group of physicians.

[jessamineny]

I had a close friend who died from liver failure related to Hep C, a guy, he died in his 50s about 5 years ago, he also drank A LOT during various depressed phases of his life, he never did IV drugs, had zero tats, had no IVs at all, he did do coke a lot for a few years in the 80s

If you share a straw or rolled-up bill while doing coke, you can get Hep C that way.

[allegro]

If you share a rolled-up bill while doing coke, you can get Hep C that way.

REALLY? Oh holy crap, I'm pretty sure they were doing that all the time. ("They" being the early-80s crew at the punk bar where I worked and they hung out.)

[Sarah K]

C is only transmittable through blood. So they would have to be shoving those bills pretty far up their noses.

[jessamineny]

https://www.google.com/?gws_rd=ssl#q=hep+c+cocaine+straw

[elevenism]

jessamineny
is right i think.
it's not EASY to get it that way, but coke sometimes makes the nose bleed a little. suppose some infected blood/coke residue got in the straw, then you snorted it.

we don't share toothbrushes for this reason.
@allegro (http://www.echoingthesound.org/community/member.php?u=76) , yes aids is spread through the blood, but remember, it can be spread through semen or vaginal secretions too. hep c is trickier to contract.
i still want to know what in the hell kind of sex toy the cdc is warning against that would "break the skin" of both people. that sounds pretty punk rock to me. are they worried about people, what, wrapping barbed wire around their penises? :p

On a more serious note, hep c kills more americans than aids these days (http://rt.com/news/hepatitis-treatment-hiv-vaccine-231/) , but people are often woefully unaware of their infection until it's too late.

[allegro]

Killing more than AIDS, mostly because of the above Baby Boomer url I posted.

http://www.cdc.gov/features/HepatitisCTesting

http://www.cbsnews.com/news/cdc-urges-hepatitis-c-test-for-all-baby-boomers-born-between-1945-and-1965/

[elevenism]

Killing more than AIDS, mostly because of the above Baby Boomer url I posted.

http://www.cdc.gov/features/HepatitisCTesting

http://www.cbsnews.com/news/cdc-urges-hepatitis-c-test-for-all-baby-boomers-born-between-1945-and-1965/

i've been reading that lately. what i can't find, however, is a clear cut reason as to WHY that generation is more likely to be infected. i suppose it must have to do with what the world has learned about sterilization and blood-borne pathogens in the past few decades.
but the articles about the boomers say that they are more likely to have it than other generations and then lists the risk factors for hep c in general as the cause.

Whatever the case may be, hopefully this will drive down the cost of the cure because the biggest segment of the infected community is reaching retirement age, with many dependent on medicare.

sigh. it's been a scary 3 days for us, full of research, fear and some hope.

[allegro]

i've been reading that lately. what i can't find, however, is a clear cut reason as to WHY that generation is more likely to be infected. i suppose it must have to do with what the world has learned about sterilization and blood-borne pathogens in the past few decades.
but the articles about the boomers say that they are more likely to have it than other generations and then lists the risk factors for hep c in general as the cause.
They say it's likely because of blood transfusions which weren't screened for Hep C until 1992 (Hep C wasn't identified until 1989, although that doesn't mean it wasn't around for many many decades, unidentified), although the reason Boomers are the biggest group still isn't totally understood.

Medicare Part D (prescription coverage) requires additional out-of-pocket spending by Medicare recipients (prescription drugs are not covered by Medicare Parts A or B). See this (http://www.pcmanet.org/research/new-milliman-study-hepatitis-c-drugs-to-increase-medicare-part-d-spending-up-to-5-8-billion-in-2015). The drugs are just driving up the cost of Part D for all seniors on fixed incomes. Lovely. God bless America.

Medicare Part A, however, DOES pay for liver transplants. Sigh.

edit: Here is the full report (http://www.pcmanet.org/images/stories/uploads/2014/partdpremiumstudymilliman.pdf) re the above link.


In December 2013, the Food and Drug Administration (FDA) approved Sovaldi to treat HCV. This new treatment reportedly costs $84,000 for the typical 12 week course of treatment making it one of the most expensive drugs to enter the United States market. Some patients with genotypes 1 and 3 are likely to require 24 weeks of treatment (with a current cost of $168,000). Olysio is another high cost HCV drug to enter the market and has a 12 week treatment cost of approximately $66,000. The relative use pattern for these drugs is not well established at this time so for the purpose of this study we are assuming an average cost of $84,000 per course of treatment for a patient who uses one of the new HCV drugs (which corresponds to a 12 week treatment of Sovaldi).

Unlike some other high-cost specialty drugs, the new HCV drugs have a significant patient base so their financial impact causes a meaningful and measurable increase in cost to beneficiaries and United States
taxpayers. No one knows for sure how many infected beneficiaries will ultimately receive the new treatment, but if for example, 50% of infected Medicare Part D beneficiaries were eventually treated with the $84,000 course of treatment, approximately $11 billion of new spending would enter the Part D system. The magnitude of the potential cost is significant on both an absolute basis as well as relative to the $75 billion in total individual Medicare Part D cost that CMS is projecting for 2015. Based on Milliman’s December 2013 HCV study, HCV is more prevalent among low income individuals than it is for non-low income individuals (2.91% of the Dual Medicare and Medicaid population and 0.31% of the Non-Dual Medicare population). Therefore, the federal government will pay more in low income cost sharing and premium subsidies, and will collect less member cost sharing to offset government spending associated with HCV drug therapy.

[elevenism]

@allegro (http://www.echoingthesound.org/community/member.php?u=76) , i just want my wife to get better. she is starting to get sick.
and like i said, ribavirin and interferon just slowed it down.
we were supposed to have at least 15 years together. we have only had 3.
i've been awake for 76 hours trying to figure out how to get her treated and just panicking in general. and no, i'm not on speed or coke or anything.

i'm hoping to god that this new media awareness about the cost of the cure for a deadly disease, and the fact that many have it who are unaware and will soon BECOME aware, will force these terrible drug companies to sell the medicine at a reasonable price.

i'd give a foot. a couple of fingers. i'd give just about anything.

God bless america indeed..

[allegro]

@allegro (http://www.echoingthesound.org/community/member.php?u=76) , i just want my wife to get better. she is starting to get sick.
and like i said, ribavirin and interferon just slowed it down.
we were supposed to have at least 15 years together. we have only had 3.
i've been awake for 76 hours trying to figure out how to get her treated and just panicking in general. and no, i'm not on speed or coke or anything.

i'm hoping to god that this new media awareness about the cost of the cure for a deadly disease, and the fact that many have it who are unaware and will soon BECOME aware, will force these terrible drug companies to sell the medicine at a reasonable price.

i'd give a foot. a couple of fingers. i'd give just about anything.

Are you even sure she is sick because of the Hep C? She is still recovering from meningitis. Has she been to a big city with real docs, yet, for an evaluation? Don't panic and jump the gun, here. You have to stay positive. I have friends who survived Stage 4 cancer and their positive spouses really helped. But sitting at home doing Internet research isn't going to help. You need to get her good medical attention right now. It takes DECADES for the cost of drugs to come down and you don't have time for that nonsense. You need treatment evaluation, first. Think positive thoughts. Panic isn't helping her (or you). These "terrible" drug companies found a cure. But the first several years cover the cost of FINDING that cure. And nobody pays cash, really, go ask doctors and get help before you get negative in advance.

We don't have socialized medicine, here, and you know you are never going to move to another country. Hell, you probably won't leave Stratford. So be realistic and work calmly with what you have right now as soon as possible. Think Zen thoughts, don't rail against the system - get it to help you.

But don't waste time playing Doctor, get her evaluated asap. You need follow-up treatment for her meningitis, anyway.

[elevenism]

Thanks, allegro . I REALLY needed that. and good lord, you've gotten to know me pretty damn well this past year or two!
And we are. We've been trying to find out which insurance is best for her and get it asap.
And you are right, many of the symptoms could be attributed to the meningitis. So there is a possibility that she's in better shape than we think.
But there are several symptoms that AREN'T attributable to meningitis, and she's had some of them since before she got meningitis.

I WAS being positive 24 hours ago, reassuring her and telling her that this is a GOOd thing, that we are going to get her insurance, a hepatologist, and that now is not the time to panic.

I need to get some sleep is all.

[allegro]

There you go, reassuring, focus on ongoing care, positive thoughts. That's the way! :-)

Stick with name brand insurance if you can. For instance, Blue Cross Blue Shield still has really good customer service and everybody accepts BCBS (PPO). I had Humana for a while and had pretty good experience. But stay away from no-name coverage; she needs Cadillac insurance, if you can afford it (your Mom can afford it). The ACA made it a LOT more affordable.

[elevenism]

Night before last, i came home and Sheap told me that a drug company had bought the rights to Harvoni and was going to be selling it for $1 a pill.
We were SOOOOOO happy! And then we figured out that she had dreamed it. :(

On the plus side, Sheap is seeing a doctor who says there's a decent chance that she can get Sheap into a program in which the manufacturer makes the drug available at a VASTLY discounted price.

Also, the pieces of news that caused her to have the dream are spotlighting how fucked up it is that the treatment costs so much.
Many people didn't know about the situation. It's 99% curable now, but big pharma is deciding who gets to live and who dies.
The VA is refusing to cover the treatment this year, and this has thrust the drug into the public consciousness.

There are also "Dallas Buyers Club" type operations getting the drugs from India and China and such, where the cost is ONE thousand dollars instead of eighty. I sent a facebook friend request to one of the men running it, and it actually looks promising.

Finally, sheap isn't sick YET! It was the meningitis. :)
We will find a way to beat this.